Research Reports - Experiences of patients with traumatic brain injury and their carers during transition from in-patient rehabilitation to the community

Disabil Rehabil. 2016 Aug 24:1-12. [Epub ahead of print]

Abrahamson V(1), Jensen J(2), Springett K(3), Sakel M(4).

PURPOSE: To explore the experiences of individuals who have had a severe
traumatic brain injury (TBI) and their carers in the first month post-discharge
from in-patient rehabilitation into living in the community.
METHOD: Using a qualitative approach underpinned by critical realism, we explored
the narratives of 10 patients and nine carers using semi-structured interviews
approximately one month post-discharge. Thematic analysis was carried out
independently by two researchers.
RESULTS: Firstly, perceptions of support were mixed but many patients and carers
felt unsupported in the inpatient phase, during transitions between units and
when preparing for discharge. Secondly, they struggled to accept a new reality of
changed abilities, loss of roles and loss of autonomy. Thirdly, early experiences
post-discharge exacerbated fears for the future.
CONCLUSIONS: Most patients and carers struggled to identify a cohesive plan that
supported their transition to living in the community. Access to services
required much persistence on the part of carers and tended to be short-term, and
therefore did not meet their long-term needs. We propose the need for a case
manager to be involved at an early stage of their rehabilitation and act as a key
point for information and access to on-going rehabilitation and other support
services. Implications for Rehabilitation Traumatic Brain Injury (TBI) is a major
cause of long-term disability. It can affect all areas of daily life and
significantly reduce quality of life for both patient and carer. Professionals
appear to underestimate the change in abilities and impact on daily life once
patients return home. Community services maintain a short-term focus, whereas
patients and carers want to look further ahead - this dissonance adds to anxiety.
The study's findings on service fragmentation indicate an urgent need for better
integration within health services and across health, social care and voluntary
sectors. A link person/case manager who oversees the patient journey from
admission onwards would help improve integrated care and ensure the patient, and
carer, are at the center of service provision. 

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